Interventions for severe genetic syndromes? Your thoughts...?

I was wondering what you guys think about some of the interventions that are done on babies who are born with severe genetic syndromes and have basically no chance at life for more than a few months?

We recently had a baby who had Trisomy 18, and you didn't even have to think twice to realize that this baby wouldn't be alive very long- 29 weeks, but the size of a 22 weeker, severe physical defects (no eyelids...can't get over that...), etc. I was talking with one of the doctors and they told me that the baby wouldn't live more than a few months in a best case scenario, and here it was, on an HFOV with drips out the wazoo. Parents refused to sign a DNR order, and wanted the baby resuscitated until they arrived at the hospital should she suddenly crump out while they were at home (they were adamant that the baby be alive when they arrived at the hospital, but that's a whole different story).

Just wondering what your personal thoughts were (or, heck, policies on these types of cases, if you have any) on the subject.

Social work intervention - My sister who is a social worker once told me that anyone can do grief counselling but only correctly trained personnel can do greif therapy. Greif therapy if it is done correctly helps people come to terms with death and dying. I have seen it done with a young near drowning that had a tragic outcome. Not only did the social worker manage to get the family through the incident and stop them from flying apart but she helped the family accept that the child would never be the same.

It takes a very skilled social worker/psychologist to effect this kind of change but it can be very worthwhile.

In 10 years of working NICU, I haven't seen extreme measures done on too many babies like you're describing. The worst I've seen was born without a face--yes, no face. Just a tiny hole where the mouth should be. The baby was wrapped up, but the resident said the rest of the baby was in sad shape. They brought the baby to the NICU and put it under a warmer, kept him wrapped and warm until he died about an hour later. It was gruesome. But for others with no chance, like anancephalic kids, we usually just fed them if they were still alive. It was rare that heroics would be done on an infant who was clearly doomed.

Many parents cannot grasp the reality of it, and do need grief therapy. After watching medical shows on TV, they think we can do anything! And the doctors also need to take a stand on what we will and will not do to this poor baby. Nurses too!

If it were MY baby I think I would not want all the interventions.It would be a difficult decision,but,so many times I wonder how much suffering we inflict on the babies. Sometimes I feel like you just have to let go,but,that is my opinion for ME.

As a nurse,however,I have always felt that I should be there to support my patients. It is so hard for them to deal with the loss of their baby. I think that social worker and /or spiritual leader intervention is helpful.

I'm new to the NICU world and have not seen to much as yet but we do have a baby in our unit now that was recently diagnosed with NEC..Basically the parents were told that 75% of his intestines are gone!! The parents want everything done at this point..Very sad situation. We just have to watch him die slowly!! It's extremely hard on the nursing staff as well. I feel that we should also have some counceling in situations like these.. Linda

Sometimes this is a cultural thing, in my experience. It's important to find out WHY the parents want everything done, or why they want the baby alive until they get there, or whatever. If the Social Worker doesn't find out (and that would be a dang good thing for them to do), or doesn't communicate the parents' rationale to the rest of the team, then you have to ask them--and get a good translator, if necessary, to do it.

Having team meetings, with or without the parents, can help everyone cope w/dilemmas such as these. It also keeps everyone on the same 'page' when communicating to the parents.

If you're on the night shift, can't find the social worker, can't communicate w/the parents for whatever reason, talk (or e-mail) to the NM or the CNS, or some other honcho to see if you can clarify the situation.

IMHO, it is really counterproductive to discuss among yourselves in the middle of the night how unfair or sad the situation is, or try to determine what 'those idiotic' parents are thinking.

What IS constructive is to support the nurse taking care of the baby that shift. Often, what happens is that other nurses approach the nurse w/that assignment and offer opinions re: the inappropriateness of the treatment plan, the family or other things w/which she has no control. Instead, just offer to help her in any way you can. Having been there and done that, I KNOW what a tough spot she's in.

NOt a heck of a lot of expereince with this one. I don't think they even call us for Trisomy 18 babies. I remember we were called to one delivery and the peds wanted to know what for. (Diagnosed by AFP that was wrong BTW)
We had one little guy with us for about a day.Many anomolies, one of which was having an open skull. We had to put a wet to dry over his brain.
We eventually transferred him to the newborn nursery. His mother pretty much kept him at her side until he passed away a couple of days later.
I think PNC and a realistic expectation presented to the parents prior to delivery is a key. When you tell someone that the baby they'll have in three months is not going to survive more than a week and why it will sink in better.

Wow, Sandi..."idiotic parents"?...here's a virtual margarita from me to you?

What I was really wondering was how aggressive your teams get when they are presented with these types of babies, though in hindsight, I realize that so much of it is wrapped up with parental desire that this question is a difficult one to answer.

Also, the more I thought about the whole PNC thing, well, our moms usually come in off of the street, and PNC is rarely seen. I suppose that could be another reason this seems to happen so often on our unit- we don't get to reach them ahead of time to discuss possibilities; prenatal US is virtually unheard of with our demographic, and the mom who has PNC is rare and most definitely the exception to the rule.

The nurse who was working with this baby was a new grad, and she was having a very hard time grappling with the ethics of this type of situation (haven't we all been THERE, you know?).

I think we're at a disadvantage because of the area we're in (urban, very poor, etc.), the types of patients we recieve (VERY young, mostly uneducated, unemployed, etc.), and the fact that we're part of a teaching network where most of our "counseling" is done by residents and interns who change every 30 days and usually are just "breezing through" on their way to their residency of choice, and who typically don't want to discuss this because it's hard and it's new to them, so it gets passed off and dealt with rather brusquely sometimes.

Add to that that our "grief counselor" is a single person who I've never met in my entire life and is rarely available, our "clergy" consists of one Catholic priest and one nun who are never available at night and have a limited effectiveness in such matters, etc. and it's not an ideal situation to aid someone dealing with circumstances like these.

We have alot of mothers who have had no prenatal care, cultural reasons we have a large arabic community also a drug using community under the umbrella of our area health hospital.
Alot of intermarriage birth defects etc.

We have to resus them all, and then councel the parents on what the Collective staff team believe is in the best interest of the child...usually to withdraw treatment. then they have the time to see their child and seek the advice of their religious councel. Usually, they all withdraw treatment within 24hrs.

Having said that we have seen ones who make thier child linger and suffer as they cannot handle the greif or guilt of making that decision.

I guess in an ideal world PNC and early intervention would work.But you are so right. A lerge percentage of moms never get it
As with most babies with a poor prognosis, a family meeting needs to be held ASAP with the attending, social worker, clergy, primary nurse and parents. The parents need to be helped into their decision. Some parents need you to make the decision, meaning they know what they should do, they want you to say, "The best thing would be to let him go in peace."
Seems like this new grad needs some steering in the right direction as well. Perhapes her former preceptor could help with that.

In our hospital, from what I understand, the parents don't have complete control over medical treatment, any more than relatives do in an ICU. Our medical staff has been very... I don't know the right word, but forceful, in certain cases and basically told the parents they would not run a full code on a baby without any hopes for a positive outcome because it's abusive and the parents usually go along. There are people who think slow codes are the answer, but I don't know anyone who would actually do it for fear of losing their lisence or job.